Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

~~~***GAGWTA sistas***~~~

Long post...

Chris- First of all a big WHOOOOOOO HOOOOOO!!!! for your awesome news!!!

I held it together and have lost it like you did when my onc walked in the door and asked me how I was doing... Anyway, a couple of thoughts. First of all, you have no reason to feel apologetic for being proactive about your health! You are doing the right thing. Those docs would much rather have you examining yourself and coming in to find out nothing's wrong than to have you ignore your body and go in too late to help you. I was encouraged when you posted the other day about new lumps popping up, that's most likely cystic, and apparently it was in your case. My tumor felt just like a teeny rock, I mean it was HARD. I know this might sound like a dumb question, but have you ever been taught to do SBE on a model that shows the difference between how a benign breast lump and a tumor? Every gyn's office should have them.

Do you have any other family members with a history of BC? I can't remember if I asked you before. I have a friend, a member of my support group for young women w/bc, who is an advocate for genetic cancers. She started F.O.R.C.E., a nonprofit organization for women who are at high risk of getting breast and/or ovarian cancers due to their family history and genetic status, and for members of families in which a BRCA mutation may be present. Her web site can be a helpful resource for anyone who knows she is at risk, who wonders whether she might be at risk, or who cares about the issues and concerns that we face.
There's alot of good info on her website if you're interested.


Laurie- One lesson I've learned from my bc journey is to take care of myself. Sometimes I'm better at doing that than others! lol But if you want to have reconstruction, well that's part of taking care of yourself. Don't feel guilty about taking the time to have it and recover from it. Yes, it does affect the entire family, but that's such a short time in your lives and if it helps you, it's more than worth it! I had bilateral masts with immediate reconstruction (expanders followed by permanent implants) so I have limited knowledge about going without (only during the early part of the expansion, I just wore big shirts to hide my flat chest.) I have friends who have used tee shirt pockets to sew into their bras and swimsuits to put in a prothesis.

I've posted a little about nutrition here. Over the years I've gone back and forth (I love wine, chocolate and chippies, I could live off of those 3 food groups!) but I feel determined this time, since I'm immune suppressed and at risk for so many cancers and other nasty diseases, that I need to do everything in my power to fight back and be as healthy as I can be. I do follow a diet plan a bc friend gave me. Basically, every meal is a lean protien fruit or veggie, a healthy carb and a good fat. BUT, you do not cook in fat. According to the man who does this diet, when fat is heated it becomes carcinegetic, so you cook in non-stick pans, I use alot of fat-free chicken broth too, and add the oil to your food after you cook it. You eat 4-6 small meals a day to keep your blood sugars level. It's really been very easy to do, and I'm enjoying cooking, using lots more spices, practically no prepackaged foods. We do have goodies, but not frequently. PM me if you'd more info I can send it.

As far as the family goes, my kids had become horrible eaters. I told them I need to be healthy and they do too. They usually eat what I cook, but sometimes I have to make 2 things, if I know they won't eat what I've made, or they can try it and if they don't like it they can make somethinng else for themselves...it's not a big deal. We pack school lunches every day now instead of them buying God knows what at the cafeteria. I can even get my little one to try a couple of fruits, she still won't eat veggies, but it's a start!
HTH

Whew, I'm done typing!

 

[nitsirk987]

just wanted to say "hi"... i'm new to the community board, and thought it might do me some good to listen to your stories... just to let me know, that i am not the only one out there going through all this stuff..



kristin

 

[Pea-n-Me]

GAGWTA!

Chris, glad your visit went so well. Sounds like you have a great doctor. (I always get very emotional, too ).

Laura, congratulations on following such a healthy diet! I'm working on it but I can't say I'm as diligent. Your post, though, is motivational (are you sure no chocolate)?

Kristen, welcome neighbor! Sorry to hear your reason for joining us but you're in good company, that's for sure!

Speaking of emotional, I found out recently that the couple we donated our frozen embryos to is pregnant! Lots of emotions swirling around in my head but I'm really very happy for this lovely couple who has been trying for many years to start a family. Give your kids an extra hug today for me, they really are a precious gift!!

 

[nitsirk987]

thank you!

 

[MerryPoppins]

GAGWTA!

Great news Chris. What a relief! Now promise that you'll go for regular mammograms.

Welcome Kristin! Glad to see you here.

Linda, will you get to see pictures of the babies? Was it the first try with your embryo? What a wonderful gift you gave that couple and those babies too.

Gotta run. Lots going on around here today. You guys are in my thoughts and prayers.

 

[Laurajean1014]

Good afternoon, Everyone!

 

[laurabelle]

kristin- Welcome! Glad you stopped by!

Linda- Oh I didn't say no chocolate wine or chippies...lol, just not all the time anymore! I'd say 90% of the time I'm eating healthy, so when I do eat the other stuff, I don't worry about it.

That's pretty amazing about the embryo donation, I think it's awesome! I can imagine that is emotional for you...

Merry Poppins & Laurajean1014- hey!

 

[Lessa of Pern]

I was not very happy last night.

my older daughter, Jen -- she'll be 15 next month -- slipped and fell on our front porch (never run in the rain while wearing flip flops!). we have a metal basket for firewood on the proch, and when she fell she jammed her foot -- her nealry bare foot -- into the basket. she has a very deep cut on the bottom of her foot, and we thought she may have broken a toe. turns out she only bruised it.

but what was really upsetting -- I took her to the ER to get it checked out, and left her there with my sister. as soon as I filled out the consent form and the isnurance forms, I went home. I'm immuno suppressed from the cheom, and couldn't risk exposing myself to all those exotic germs in the ER waiting room.

it's a sad day when taking care of myself means I can't take car eof my daughter. yes, she was in good hands...but I should have been there.

 

[laurabelle]

Lessa- I know how you feel...I hated every time I couldn't be there for something for my kids because of being sick. It feels awful. Try not to be too hard on yourself though, because if you got sick from hospital germs, things would be alot worse! I hope she heals quickly...

 

[NHAnn]

Chris...I'm so pleased to hear your news and it sounds like you have a wonderful caring doc!

it's a sad day when taking care of myself means I can't take car eof my daughter. yes, she was in good hands...but I should have been there.

Aw Lessa.... you gotta do what you gotta do...but it sure isn't easy

kristin...welcome to the CB and this thread...sorry of course that this thread is of interest...but you know what I mean Wonderful support and information and fun and caring here! BTW...I am a transplanted MAssachusetts native from the Framingham area

GAGWTA~~~~~~~~

 

[TigerCheer2009]

Okay. The cheerleaders at my school are doing Pink Ribbon Night.

I am going to wear a pink ribbon for the DIS BC Survivors...anybody else? I think the cheerleading advisor said that 75% of the profits are going to the local branch of Susan G. Komen.

I just thought I would ask because you guys are SO awesome and I thought I could come to you guys!!!!! Hugs to you all!

 

[nitsirk987]

thank you everyone for all the warm welcomes!!

i guess i will share my story with you..

let's see.. it was august of 2001, and my dad was just becoming very ill.. my DBF at the time, had found a strange lump in my left breast (hee hee, kinda a strange way of finding a lump, but i thank him everyday for finding it), but i just ignored it and hoped it would just go away. i had enough on my plate at the time w/ my dad being as sick as he was. well, after waiting a bit, i finally made and appoitment w/ by ob-gyn and had her take a look at the lump. she sent me for an ultrasound, and said that she thought it was just a cyst, but still wanted me to see a specialist.. so i called and booked the appt for oct 28th. my dad had to be put in the hospital at the begining of oct, and stayed there until he passed on oct 25th, 4 days after DH and my 1st year anniversary. so i had to re-schedule my apt with the surgeon until november.. let's jump ahead, i go in, do the needle biopsy, says it looks ok, but he would still like to remove it because of my age... i was 25 at the time. so i go in for the lumpectomy, and it's cancerous.. wonderful.. had a breakdown when i found out.. blah blah blah. had 4 rounds of a/c chemo, 7 full weeks of radiation, and then i was on tamoxifen.. now time passes. november of 2003 comes, i go for my 6 month mamogram, and they found another lump.. different kind of cancer this time, same breast. great... now i had to have a mastecomy. i chose to have a double, why not, right? so now i was 27 years old, going in to have both my breasts removed. not fun at all. so here i sit, i am now 29 years old, with nice perky ****s!! i went for the expanders & implants, which i have to say, was not a fun experiece at all!! but i couldnt' go the trans-flap route, cause i also have 3 herniated disks in my lower back.. so i now have 2 brandy new ****s, filled w/ 550 cc of salene :O) had some issues w/ scare tissue on the breast i had all the radation on, so i had a surgery in april to have that all scraped, and a new implant put in.. also had to "finish" the reconstrucion.. if you catch my drift :O)

so, that's my story.. sorry for any spelling mistakes.. any questions, ask away!!

thanks for listening

kristin it's chilly here tonight!! can't wait until saturday!!!

 

[Pea-n-Me]

will you get to see pictures of the babies? Was it the first try with your embryo?

Yes, our embryos survived the trip from our clinic to theirs as well as the thawing process. They were implanted for the first time and she is pregnant after many years of unsuccessfully trying to start a family. They are grateful - and incredibly excited and happy.

We worked with a licensed adoption agency and chose this particular couple, and they in turn chose us. They agree to a letter and picture once a year which is really the reason we chose this option (as opposed to destroying the embryos or donating them anonymously). I wanted to give them a chance at life but couldn't bear never knowing what happened to them. (My own children originated from this same "batch" of embryos). It wasn't by any means an easy decision, but this way we know the outcome and we can share in their joy as well.

It's all I've been thinking about for the last few days...

 

[Pea-n-Me]

Lessa, sorry about your DD. You were right to leave, though, germs are everywhere in there. I work in a hospital and was told by my oncologist I shouldn't work during my chemo because of that, at least not doing patient care. I did Staff Education for a while while I still could, staying out of the patient care areas, but then had to stop altogether when I got too weak.

Hope your daughter's foot is feeling better soon. Ouch!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

thank you everyone for all the warm welcomes!!

i guess i will share my story with you..

let's see.. it was august of 2001, and my dad was just becoming very ill.. my DBF at the time, had found a strange lump in my left breast (hee hee, kinda a strange way of finding a lump, but i thank him everyday for finding it), but i just ignored it and hoped it would just go away. i had enough on my plate at the time w/ my dad being as sick as he was. well, after waiting a bit, i finally made and appoitment w/ by ob-gyn and had her take a look at the lump. she sent me for an ultrasound, and said that she thought it was just a cyst, but still wanted me to see a specialist.. so i called and booked the appt for oct 28th. my dad had to be put in the hospital at the begining of oct, and stayed there until he passed on oct 25th, 4 days after DH and my 1st year anniversary. so i had to re-schedule my apt with the surgeon until november.. let's jump ahead, i go in, do the needle biopsy, says it looks ok, but he would still like to remove it because of my age... i was 25 at the time. so i go in for the lumpectomy, and it's cancerous.. wonderful.. had a breakdown when i found out.. blah blah blah. had 4 rounds of a/c chemo, 7 full weeks of radiation, and then i was on tamoxifen.. now time passes. november of 2003 comes, i go for my 6 month mamogram, and they found another lump.. different kind of cancer this time, same breast. great... now i had to have a mastecomy. i chose to have a double, why not, right? so now i was 27 years old, going in to have both my breasts removed. not fun at all. so here i sit, i am now 29 years old, with nice perky ****s!! i went for the expanders & implants, which i have to say, was not a fun experiece at all!! but i couldnt' go the trans-flap route, cause i also have 3 herniated disks in my lower back.. so i now have 2 brandy new ****s, filled w/ 550 cc of salene :O) had some issues w/ scare tissue on the breast i had all the radation on, so i had a surgery in april to have that all scraped, and a new implant put in.. also had to "finish" the reconstrucion.. if you catch my drift :O)

so, that's my story.. sorry for any spelling mistakes.. any questions, ask away!!

thanks for listening

kristin it's chilly here tonight!! can't wait until saturday!!!

Kristin- I'm so sorry you lost your dad... that was a horrible time for you! I know lots of women who's SO found their lumps! My gyn found mine on my annual exam. I was 36yrs old. I couldn't find any other younger women's support groups at the time and ended up starting an online Yahoo group called Sisters In Survivorship, for women dxed under age 40 (when we would have gone for our 1st mammogram.) If you are interested in joining (it's a private group- exclusively for young women with bc) just PM me. One of my dearest BC sistas was dxed at age 22, got pregnant on chemo, has gone on to have 3 healthy children and is coming up on 10 years of survivorship!!!
I'm glad you're here!

Linda- I think you rock! Praying her pregnancy brings a beautiful healthy baby into the world!

I'm going for my infusion this afternoon. I told hubby I'm just going to go alone. I have an appt. with my doc at 1:00, then infusion at 1:30. I have to premed with Benedryl 1/2 hr before the infusion starts then it takes forever for the pharmacy (can I get a witness!?!) so last time they didn't even get my I.V. started until after 3:00. He would have to leave before my infusion even starts to pick the girls up from school, take my oldest to soccer practice and it's the 1st middle school dance of the year tonight. I told him as long as the Benedryl doesn't make me sleepy I'll be fine and since I'm on the steroids it hasn't so far. We're going to get our kitchen remodeled (our house is pushing 50, and the kitchen is mostly original... yuck!) so I'll be browsing the cabinet catalogs!
We bought our Nightmare Before Christmas/Corpse Bride tees for MNSSHP costumes yesterday and started packing for next week!!!

 

[nitsirk987]

opps, sorry for the bad words!!! my appologies

 

[Lessa of Pern]

thanks for sharing your story, Kristin.

 

[Lessa of Pern]

and Tiger, glad to hear you're wearing a pink ribbon.

 

[MerryPoppins]

Aw, thanks TigerCheer! That's sweet of you to wear it in honor of us.

Kristin, thanks for sharing. We got our diagnosis at about the same time, but I was 40. Wow, you were going through a lot all at once. I'm sure that was like trial by fire! You sound really strong to make it through all of that, and you have a good sense of humor. Personally, I think my sense of humor helped me so much on my cancer journey! I'd laugh and friends would ask me how I could find anything funny in the situation. I think it was either laugh or cry, so I'd laugh. I hate to cry. It give me a headache. Don't get me wrong, I cried too. But laughing made me feel better.

GAGWTA!

 

[nitsirk987]

merry poppins,

i couldn't agree more, you have to have a good sense of humor to get through the whole cancer "thing".. yes, i had my days that i just broke down and cried.. mostly when i lost my hair. but DH would call me curly, when i was bald, and that made me laugh.. he's such a goof ball, but i love him to death!